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Patient and Client Council Blog Entry 50 - Endometriosis

Endometriosis is a common condition which has a profound effect on the quality of life for women and their families. We are bringing together patients, clinicians and decision makers need to discuss how best to improve outcomes and quality of life for women who have endometrioses and their families

The exact cause of this condition remains unclear. Two things are certain: It does not relate to life-style, nor is it caused by sexually transmitted diseases.

The experience of women across Northern Ireland who suffer from endometriosis is not good. The physical and social costs of this condition are considerable, with significant absence from work, issues with body self-image, relationship difficulties and depression frequent occurrences.

Decision makers and clinicians need to work closely with patients and their families to develop a plan for endometriosis which will address the shortcomings of the existing services and ensure a responsive and effective service in the future.

Funding is scarce for new developments but many of the service improvements required do not need huge injections of funding but a different way of working.

Comments are now closed

Jacqui McBride 23 Jan 2014 09:06

Jacqui

I suffer from endometriosis myself and agree that a forum should exist for support for sufferers. Only sufferers truly understand the extent of the physical and mental pain.

Anna Jaminson 20 Jan 2014 13:41

Harriet, I am sorry to hear of your experience with Endometriosis. Sadly this happens all too often. There is a voluntary support group
in Belfast and we have brought all of this to the attention of the Minister of Health. Twelve girls -and some husbands- from our group will speak tomorrow night at the event in Riddel Hall and I don't think anyone listening will be left in any doubt as to the havoc caused by Endometriosis. Anna www.endosupportno.org

Jacqueline 20 Jan 2014 12:49

Its not hypnotising Endo sufferers need ... we need GP's and Gynae Consultants getting their finger out making the correct diagnosis and giving proper treatment...it s very hard to accept pain when it takes over all of your existence and (yes I have tried all kinds of pain relief even morphine patches I can handle pain) yet because it is a "female condition" it is swept under the carpet as its too embarrassing to talk about. There is great support group AT BCH who are continually fighting for better understanding and specialist services for Endo sufferers.

Francis Mckenna 18 Jan 2014 23:07

Pain management using acceptance and commitment therapy based on the self-help book living beyond your pain would be a good step forward to be found on Amazon. This involves accepting pain while at the same time getting on with the business of the day. The severity may be reduced by defusion which is saying to yourself I am for example experiencing pain. Effective painkillers would be a good idea also. Clinical psychologists operating in the pain management area would be helpful to bring in to this. Hypnotherapy hypnotizing the person not to feel pain might work for some.

Harriet 18 Jan 2014 11:32

I suffered for years from the age of 18 with extreme abdominal pain. I was referred for numerous bowel test etc. and it took years, until I went private and the consultant did a laparoscopy exam and discovered the endometriosis. I had to have a full hysterectomy aged 38 which was devastating and has been the result of relationship issues etc. I was not given any help or advice after the hysterectomy, discharged with no follow up.

Gabrielle Mc Aleer 18 Jan 2014 00:16

I experienced endrometriosis from onset of puberty until i fell pregnant with my daughter. For 28 years on and off and would never had thought of its effects on my life until i read this synopsis...there no information laeflets on it but professionals always said that a pregnancy would cure it!!!!!

Allison Barron 17 Jan 2014 19:44

I suffered with Endometriosis for approx 20 years. My life was a mess with days off work and in constant pain.My consultant recommended a hysterectomy when I was in my late 30's but I would not hear of it. Finally when I was 47 I developed a huge cyst on my ovary as a result of my endometriosis and agreed to a full hysterectomy! I wish I had done it 10 years earlier,it changed my whole life and made a new woman of me, to be rid of this horrendous disease was like getting a brand new lease of life.

Mary McSorley 17 Jan 2014 18:57

The medical profession needs to be more alert to endometriosis. Last year, after many years of discomfort and a lot of pain, I was admitted to hospital to have a large ovarian cyst removed. Turned out I had cysts on both ovaries and the surgeon was shocked to discover stage 4 endometriosis that had not been diagnosed despite an xray, ultrasound scan and CT scan. My insides were so badly messed up, I have to have everything taken out which, of course, let to immediate menopause. The operation was also very difficult and recovery took much longer than a 'normal' hysterectomy. With hindsight, I think my GP should have considered endometriosis when I first presented years earlier with the symptoms I had.

John D. Norris 17 Jan 2014 17:38

I know nothing about this complaint and I am sure that many other men are likewise.
Perhaps if what the complaint is and the consequences of it were made more public more people would support the cause

Majella Curranv 17 Jan 2014 16:28

Why does it take Dr,s si long to find out this condition and I do know itis so very ppainful and unless you have it yourself people do have little understanding or the work place also. I wish the could find out what causes it and why its so painful